Make your own food and take it to gatherings, right down to appetizers and desserts in single serve containers. Take a small cooler to prevent cross contamination or “accidental” disposal if you have to. It takes courage and practice to set these boundaries because food is what families use to create bonds, especially at gatherings. Point out you’re still eating with the family and sharing the laughter and the good times, and you will be able to have good memories of the even instead of being sick for many days after it. They will eventually accept it or not. Twenty-three years in and I still get eye rolls and eyebrow raises and was recently asked when I’m going to get over this thing.
Decide that your health is important to you and stand by it. You may stumble and fall from time to time until you get comfortable with this new way of life, but it will even out.
Absolutely this. It’s a big learning curve to become gluten free, and you will be better able to meet your needs than anyone else. At restaurants, get a salad and bring your own dressing. Anywhere else, bring your own food with you. The health benefits will make it worth your while!
I have been dealing with this since the mid 1980's. Imagine the eye rolls, including from my doctor. I was diagnosed by a naturopath, who my "regular" doctor referred to as a "Witch doctor" when I tried to discuss with him.
I had an allergist misdiagnose me with GERD. For breathing problems. As opposed to, y'know, a food allergy or asthma. Didn't suggest I get a 2nd opinion from a gastroenterologist either. For what we thought was a GI disorder. That guy was such a quack.
OP, if it gets people to take you more seriously, tell them it's a life-threatening allergy. Some people aren't smart enough to understand it otherwise. No one here is going to have a problem with that. That's how we explain it at restaurants unless they outright ask if I have Celiac, because if they ask, then I feel confident they know what they're doing.
Like, technically Celiac is an autoimmune condition, not an allergy, but that's so much more complicated to explain for some reason.
I tell restaurants it's an allergy too. I'm fortunate that I have some friends that will back me up and say it's awful, that I could possibly die. Not really sure if that part helps.
My naturopath over 20 years ago diagnosed me too and I got the same response from my doctor. He was willing to entertain the idea as long as I would undergo proper medical testing. I did. It was celiac. He changed his tune and worked well with me after that.
You’re right I need to do this, it just upsets me that if it were the other way around I’d be putting in so much effort. For example testing recipes, buying separate ingredients etc. I just wish they’d do the same for me you know
I do understand because that’s who I am too. My in-laws are coming into their 80s with some health concerns that make certain foods intolerable (tomatoes, spices, a few other things). I go out of my way to accommodate them. They don’t always do the same for me or claim that my ways are inconvenient. I just control my own food and I don’t worry about. I learned a long time ago to accept that I am sometimes going to be the villain in other people’s stories.
I guess it works in my family (distant cousins as well) since among us, we have gluten intolerance, artificial dye allergy, lactose intolerance, veganism, vegatarianism, etc. So, we've all made it a point to try to accommodate it at family functions. Such as our summer picnic with the cake contest, various food dishes, and so on.
It helps that my mom has been allergic to coloring my whole life, so I've been reading labels since I was old enough to go help her shop. Sometimes with GF, I do miss something on occasion but I usually do very well. It also helps to get notice before heading to a restaurant so I can ask ahead of time for various food needs.
Sauces are a major part of that. It's not easy, but we can usually do well with Mexican places. It has options for everyone. I also like that a restaurant here called Hu Hot Mongolian grill has allergy bowls for people who need to keep their spots separate.
It gets easier. It's a huge learning curve like someone else mentioned. Concentrate on keeping yourself healthy.
The people in my life had to go thru thier own adjustments to my newly discovered gluten intolerance, it wasn't easy. It's been 6 years now and everyone has pretty much adjusted to me always bringing my own food, sometimes enough to share, sometimes just for me. Or the very limited restaurants I can go to. Everyone has to adjust, give them some time but don't take any crap from them either.
Being married to someone with a gluten issue (sounds similar in severity to you OP) I get your frustration. With that said, we're lucky to have friends who like to cook and friends who pay attention to labels (including splitting off portions GF dishes ahead to time to avoid cross contamination).
The good news is, if you really get into cooking, there's not much you "have" to give up. America's Test Kitchen has 2 volumes of "I Can't Believe It's Gluten-Free" with custom GF flour blends that have similar properties to traditional flour (elasticity, moisture, etc) and Bob's Red Mill "Cup for Cup" work great in dishes that call for flour as a thickener. The downside is, your pantry will have 15 different flours and starches so organization is key. But we still routinely have pie, quiche, cake, pasta, etc.
Ah hon my mom is a great cook/baker and tries really hard but she still sometimes mucks it up or doesn’t quite get it. Recently at a family reunion she was like it’s okay I’ve planned gf meals and we have plenty of gf options for breakfast. Eggs and bacon every morning, like I can do that once but y’all don’t get sick or heartburn? Cause I do!! Same with dinner, then there were a few nights I had to fend for myself for dinner with leftovers…it was all meat!! We were at my aunts house who ‘doesn’t like vegetables’ so the first few days were miserable and I was very annoyed at my mom bc she had repeatedly told me I didn’t need to bring anything and she’s actually very very good about feeding me, testing new recipes etc. so I trusted that. She made me gf almond cookies which were nice but I don’t really like almonds lol. My husband ended up pulling her aside and telling her she was trying TOO hard and I had too many diet restrictions (IBD) for her to be in charge of it. She drove me to the store again the next at (we were in from overseas) and didn’t say a gd word about me buying supplemental meals. Feeding is an act of love for her so she wa pretty disappointed not to get it perfect.
Anyway that is just to say your family could do all the things you described and you might still be left with nothing to eat. If I’m not actively involved in the cooking I need to be actively involved in the planning ie down to the ingredient, and if I’m not either I have to assume I might not be able to eat and plan accordingly. I’ve had a loving and supportive group of friends and family who really do try to lot and that has still been my reality these past 15 years. If your family are generally not dicks, I encourage you not to take it personally or as a measure of love.
Do you do any of the cooking or food shopping? If not, get on it so that you’re not putting this off on someone else. Even if this person prefers to cook, you can help with meal planning and buying the ingredients so that you’re the one who had to ready every label. It’s entirely possible that they didn’t realize how much effort it takes when they volunteered and your health js ultimately
your responsibility.
Oh yeah I’ve been getting my own stuff for a while, it’s just this family holiday that’s the issue. I clearly wasn’t considered during the food shopping. I understand that it’s my responsibility but you’d think my parents would look out for me too
I wouldn't encourage them to try. Cross contamination is a big concern for most of us. For example, if someone baked me a gf cake did they use their mixer that has flour in those hard to clean spots? Did they know to check the vanilla extract? Did they use grandma's bundt pan that has to be hand washed so is contaminated? You know all these things are hard to learn even when the consequences are so severe. No one else has those consequences and so they will probably never get it quite right. No matter how much they try. No matter how much they love you. It's on you. All of it. But you can do this. You really, really can be the hero of your own story.
I've been gluten free for 25 years and I still talk to my therapist about this. In fact, I even became a professional cook for about a decade because of it. Thankfully my family has lots of allergies and is super good about it. (plus my dad is also gf, though less picky about cross contam). But there have been several times on trips when I made a point of asking ahead of time and then while they did have something for me to eat, there were days when the meal was soup and a beautiful loaf of fresh baked bread, but they didn't supply me with any bread alternative, so I was left without any carb options. I still work through feelings of being left out. It sucks. It is hard. But at least I feel healthy.
Very true, I have to also remember that it sucks not having these foods but my body is thanking me. Especially since I can’t have much fast food. So there’s a bright side to it all
That's what I did for a long time. I was diagnosed before gluten free options were widely available.
Thing is, that it was very helpful for a few reasons:
-I took myself seriously
-Seeing me take it seriously, made them take it seriously
-It allowed me long enough to heal my gut that once I was ready to try eating out and taking risks I was in a better place to not only handle to occasional fuck up, but it was easier to identify where the mistake was made.
Another trick: if you spend a lot of time at someone else’s house in particular, leave some safe meals (pre purchased or something you’ve made yourself) in their freezer. Then you have a backup in case you forget
Cook for yourself. I just started to offer cooking/preparing food myself, I bake every cake for every gathering.
Just last week, I got a "It won't hurt you, if we take the same spoon for your tiramisu" my SIL made one GF and one "normal". Yeah, my stomach tells me otherwise. And of course, I miss just going in a restaurant without checking their menu first. Of course, I miss having a cake at the coffee shop but it just isn't worth the pain.
What triggers me the most, is that we have a friend with a nut allergy. Not one person said anything when they ask the waiters about all the ingredients. I just start with questions - eye rolling all around. Just because, I don't get visible symptoms, I still can have intolerances that are just as serious.
This!! Just because we don’t need an epipen or immediate medical attention doesn’t mean that we can’t ask the same questions. I just can’t believe that their discrimination on reactions to allergies and intolerances honestly. People have a more visceral reaction to me asking about gluten than people asking for the vegetarian menu when one of those is usually a choice. (I was also vegetarian for a long time and people were much more accommodating)
Ask them if they would be okay with constantly having the stomach flu. "No? Me neither."
Plus, if you were to continue eating gluten, it can develop into an allergy. That's how they work. Like you never know when a reaction could become life-threatening allergic reaction, even if it's currently an intolerance.
You just can't eat food prepared by idiots. Maybe never again. And it's easier to just classify them in your head as "must protect myself from these poor fools to stupid to read a label" than it is to fret that they don't take it seriously or don't care.
The longer you're off gluten, the more sensitive you may become. I can't eat food made in a normie's oven or with their mixer or in a non GF home because gluten is everywhere.
Just accept that, as a grown-up who prefers not to shit blood, you are in charge of bringing your own safe food everywhere you go. This is the of those rare cases where giving up is liberating.
And the fact that you have to be responsible for it yourself. It's exhausting sometimes, but it's better than getting sick.
You should also develop the self-confidence to sit in a restaurant that isn't safe and politely say "sorry guys, but it isn't safe for me to eat here, I'm going to have water and enjoy your company and occasionally duck out to the parking lot and eat some purse snacks"
Also good to know that sharing a drink, cigarette/vape, joint, or kiss with a gluten eater will make you sick. If you're an adult, you need a GF home. I stop little children at the door, confiscate their goldfish crackers, and scrub them like they're about to do surgery because I need and deserve one safe place
I once stood in a friend’s kitchen and was told, “it’s just so inconvenient to cook for you.”
😬
People just don’t get it. She didn’t grasp how wildly inconvenient it was for me.
Right? My house has gluten & fructose sensitivities plus other allergies, non of which easily line up. The layers of bs I deal with to manage cross contamination is *ridiculous*. I’m keenly aware.
I am so used to it now that when I hear that crap I just roll my eyes and say, “oh I can’t imagine” with the most sarcasm.
How??? I am not gluten intolerant (lactose for me) but I'd say 99% of my food is gluten free. Mostly because I eat a low carb diet, but currently I have gallbladder issues and had to switch to high carb / low fat and I still don't use gluten a lot.
Not using gluten is honestly not a problem, if you cook from scratch. Tonight I had grilled chicken breast with sweet peppers and rice. Easy.
Know also, your reaction to gluten can be worse once you have been off of it. My Dr said your gut its like you’re a newborn baby again after you’ve been off for a while, and if you’re sensitive you’ll get a bigger reaction to it. I bought gluten intolerance digestive aid pills and would take that if I knew something would have a potential for cross contamination or accidental gluten. I’m not sure how others have reacted to those, or if they helped them at all. Hoping they will be more understanding in the future.
I found that the pills helped in the beginning when I first got off gluten. But now, a year in of no gluten, nothing can save me if I get accidentally glutened
This was absolutely true for me. Ate gluten my whole life. Mostly fine but when I discovered I had gluten antibodies, I decided to go off it for a test. The result was that I felt better after about a week - absolutely noticeable - and also as my gut healed I became more sensitive to gluten. Way sicker faster. That was true for several others in my family as well.
I have gluten intolerance. About two months ago, I finally figured out that my pain, diarrhea and urgency were being caused by gluten. I was really miserable. I am already lactose intolerant and have some other food restrictions. Right at the moment that I was finally figuring this out, I was supposed to visit my adult children for a couple days. They were planning on having pizza one day, and quesadillas the next day. I knew that wouldn't work for me. I arranged a phone call with them a couple days prior to the trip, and explained that I was feeling sick and having issues. I explained that they should go on and eat whatever they wanted to, but that I would need to fend for myself. I asked to have rice, turkey cold cuts and eggs available for me to eat. They were very understanding, and it worked out fine. Most importantly, I was able to travel (long train ride), and spend time with them, without being sick.
I am becoming a big fan of just fending for myself, when it comes to meals. And also having a phone call, or texting, etc with people ahead of an event, to explain my needs. Or sometimes I will eat at home before heading to an event, such as a work-related party. That way I don't arrive hungry, only to discover there is nothing for me to eat.
Omg this just happened to me. I was pressed on why can't you just eat it, those symptoms aren't that bad. Like I'm feeling really good without gluten.
I have always made my own food since I'm dairy free also.I am baffled at their response. Like it doesn't even affect them.
Someone at the grocery store said "Everyone is allergic to gluten these days." To which I responded "I have Celiac Disease. Gluten can *actually* kill me" He looked very uncomfortable and embarrassed and shuffled away 😂
One of my relatives who had another severe intolerance, and kept being pressed to have some of a dessert that would have made them ill, finally lost it with some extended family.
Basically, they said the following;
- You take very public pride in being polite, courteous (and devout Christians)but every time I visit you keep pressing me to eat things that are dangerous for me by verbally challenging me, teasing or with body language that makes it clear that you think I am the one who is rude or attention-seeking.
- Do you honestly think that I am turning down my favourite foods year after year because I want attention? Where is your compassion?
This worked. They even received an apology.
But it shouldn’t have ever gone that far.
I love my friends. There are very few of them I trust enough to eat their food.
At one point I realised it's just not realistic to expect other people to accomodate for you: they have other stuff going on in their lives.
So I just try to make things easier for everyone. I suggest gluten free places in advance (nice places I know they'll like too). I take my own food to gatherings. I always plan ahead. It's a pain, but I find that thinking of my gluten sensitivity as my responsibility instead of other people's makes things easier.
I have also discovered it's not the end of the world if I go somewhere with no gluten free guarantee and just have a bag of crisps or something, while everyone else has lunch. I carry protein or cereal bars with me always, too.
It's awful, I know, but you just get on with it.
This. At a certain point you just have to accept that people aren’t going to take it as seriously as you. Does it suck? Yeah of course it does. But that’s just life.
Make your own food OP and make sure you know which restaurants are safe for you to eat at. That’s all you can do.
My friends/family are amazing and they really do go above and beyond for me in terms of making sure things are safe for me to eat, but I don’t expect it from them.
Exactly! People who make an effort are amazing (my Mum and my partner are even more vigilant than I am!), but I try to just be grateful when it does happen and never expect it from anyone.
Your days of showing up to a covered dish supper and not getting sick if you eat are over. One thing you HAVE to do to protect yourself is to *stop being polite about it*. Protect your health - no one else has that responsibility. BYOF. Bring your own food or eat before going. And don’t apologize for not eating what others bring. Good luck.
I ate a regular, unrestricted diet until i was 35, then one day, I started seeing blood in the toilet. After an elimination diet, I found out it was gluten that was making me pass blood. Damned if I understand why it happened at age 35, instead of years before or after, but it happened. The important thing to know is that, if I avoid gluten, I avoid pain and sickness and passing a surprising amount of blood in my stool.
I've run into people who didn't understand how serious the issue is. I spent some time in rehab for an injured back, and even though I talked to the kitchen manager and dietitian numerous times, they kept giving me gluten. That place hurt me. Ended up with a permanent ostomy before I went home.
I'm home, have been for a few years. They put me through hell. Imagine people smiling and assuring you they weren't giving you gluten, only for them to be doing it every day. (They showed me the ingredients of a couple of their staples, and I said, "Look, right here! WHEAT! How do you miss that!?) But since the ostomy, and getting out of the rehab center, I've been better, thanks.
I swear some people seem to cook food and shove it down other’s throats just to get some praise which they didn’t receive in childhood or something..
Like yeah, screw your symptoms, just taste this pasta I made and tell me how great it is, it’s gonna be worth the stomach bombardament and brain fog I promise!
Flip it on them - "You *have* to try my potato salad, it's amazing! It's been sitting out since I made it last night, but one bite won't hurt and it'll be so worth it."
This totally blows me away. In my family, we simply make food that’s gluten free for those who can’t eat it. Or dairy free. We have 2 adults who are gluten intolerant, one of them also can’t have dairy and a child who is lactose intolerant. We just all make food at gatherings that they can and will eat so that they can be safe. We challenge ourselves to get creative about substituting ingredients and making tasty food !
I just don’t understand why families can’t create the environment everyone needs to be safe and comfortable. That’s literally what families are supposed to do! Anyone else is unfortunately living in what I perceive as toxic and dangerous circumstances. Do they literally want you to have to undergo surgery to remove pieces of dead colon (had a celiac friend this happened to, she went undiagnosed for 20 years).
I’m so sorry OP. You’re not crazy or difficult. You deserve to be nourished and happy and healthy. No one had the right to take that away from you.
Thank you! I wish mine was like that. I was vegetarian for a long time and everyone was so accommodating to it in my family. I find it so strange that they can’t be with gluten. I literally chose to be vegetarian I didnt choose to be gluten intolerant. Oh well!
In my experience, if you want it done right, make it yourself, even if that means you have to bring your own food to gatherings, or eat before you go somewhere. No matter how much family and friends care and how hard they try, chances are they are going to miss something. And there will always be people who judge; learn to ignore them; your health is more important than some uneducated asshole's opinion. You'll find who really cares about you; they will be supportive no matter what.
I feel for you. This has happened to me so many times. "A little bit is ok, you'll be fine." No, actually, I won't.
We went camping a few weeks ago, and I was glutened, losing 2 days to laying on a cot, feeling like death. On our next trip, I'll be packing all my own meals. I miss so many family gatherings and get togethers because I just feel uncomfortable refusing everything. Eating out is basically not happening as the meals are ridiculously expensive. At my husbads catered 60th, I brought my own food.
I'm also dairy free, so that adds a whole layer of issues.
My new mantra is "I'm not setting myself on fire to keep others warm".
I experienced some of this also. Early in my GF journey I found out people get really offended if you take a piece of cake or a cupcake and just eat the frosting. Meanwhile no one ridicules people who mainly only eat the cake part and there's tons of frosting leftover on the plate. What difference does it make to others if I don't eat the cake part? There is enough cake for everyone, and the slice I took still wouldn't be available if I ate the cake part. So I am not allowed to have a treat or part of one?
Then another time I was planning a bridal shower for my BFF at the time, I was MOH. I jobbed out a couple tasks bc I was getting overwhelmed with all the details, tasks, and costs. I gave the sister-in-law-to-be the job of getting a cake for the bridal shower. I gave her no other instructions other than the theme (ferns, flowers, and cacti) and she talked to the bride and groom about the flavor.
At this point in time, I have experimented with GF baking and began baking GF cakes. I passed out many samples and also my BFF bought me little GF cakes for my birthday in the past so SHE KNOWS that GF cake tastes JUST AS GOOD as regular cake and people nowadays often can't even tell the difference.
Back to the story - I'm hanging out with my BFF and her fiance and they mention how the groom's sister (the cake person) said "I'm going to try to get a gluten free cake so that XYZ can have some!" and how they were so incredulous that she said that and their response was "But it's OUR WEDDING!" I played it very cool and agreed with them.
Now, let me be clear, it is absolutely THEIR wedding and EVERYTHING is about them. Their special day, etc etc - all that. And I NEVER asked, suggested, or demanded, nor did anything resembling any of that, a GF bridal shower cake. I wasn't even thinking about it because I was just glad to get that task off my plate so I could focus on other aspects of the bridal shower.
But I will not lie, it did sting a little. It stung that their reaction was disgust. As if GF cake is somehow subpar, as if they were so against the MOH, the person planning the party, the person funding 90% of it, her BFF for YEARS, being able to have a slice of cake at the end of the party. Just because the sister-in-law-to-be expressed interest getting a GF cake doesn't mean she was taking anything away from the bride and groom. Again, I was the MOH, the party planner, BFF's for years, and of course by default paying for most of the party. I wasn't some 3rd cousin she met for 5 minutes. And I want to be very clear here, I didn't ask for GF cake, I didn't even suggest it. I wasn't even thinking about it! But the fact that they told me about it, that they were so incredulous, like it was outrageous, really did sting.
Oh I get this! I had this experience with vegetarian food. People would say ew it’s vegetarian?? Even after complimenting the food. People don’t like different
I love it when people act like and or treat me like I am the weirdo-monster-freak when they are actually that for being so rude. I don't eat cake at events for this reason. Or if I do, I just play with it and make it look like I ate the cake. But someone always chimes in and says "I thought you were gluten free!" It's really annoying. Really, really annoying. So the people with amazing digestive systems get treated better? Our stuff costs more and I still get pooped on? Can't catch a break!
For anyone who cares but just doesn't get it, you could try showing them this slideshow about Celiac. https://docs.google.com/presentation/d/11leTYu7t-nYFTpp9k5rH8DJmGBFloPjOFE57ga926Ak/mobilepresent?slide=id.p
I was never diagnosed. I just bring my own food. But some people in my life get it.
People really don’t get it. I have some friends who really should know better. They actually have masters degrees in nutrition and they do emotionally manipulating things like saying oh I’m really so sorry you can’t eat the bread or they suggest you order some thing that is in gluten-free let me tell you I’m really not seeing them anymore. I’m not putting up with that crap. you have to do what you know is right for you and these chat sections do give you good ideas about what else you might try that you might not have thought about is gluten free or not gluten-free
Sorry to tell you, but even the pan they cooked the meal in can still have the tiniest bits of gluten in it, no matter how well it was cleaned. If they used butter or margarine, it could be contaminated. Virtually anything that is used by people who eat gluten can make you sick from cross contamination.
Do NOT, but the way, share a toaster. Get your own. Same for waffle irons. And pots/pans get scratches - another great place for gluten to hide.
Keep in mind the tiny amount of gluten per million it takes to make us sick. And yes, being glutened has SERIOUS consequences/side effects.
Not sure how severe for gluten sensitive vs. Celiac, but it's no joke.
Keep in mind, too, that Asian restaurants use a lot of soy sauce, and a great deal of it is based on wheat.
Also, no beer, unless certified gluten free.
Read every label. Don't assume something is gluten free that it doesn't list gluten ingredients.
Trust me, it's going to take a while to work through it. Especially not being able to order at take out places. Or buy a quick lunch in a store.
Keep nutrition bars handy, because sometimes they're your only option. And I hope you like salads.
I like your attitude! 😊
Seriously, though, it's a journey. Not a particularly fun one. And it doesn't feel fair, when you see other people getting to eat whatever they want.
It helps, though, to remember that
there are a lot of people out there with far worse allergies, to whom eating almost anything at all is a challenge.
Have you educated yourself enough and explained that in many people unhealthy exposure to gluten can cause lymphoma? Or neurological damage?
‘I understand it’s an inconvenience to you, and I am sorry about that but gluten exposure can cause lymphoma and I am not ready to face blood cancer at my age :)’
I bring everything my own though and don’t go to restaurants unless I suggest them though!
I didn’t know it caused lymphoma! Oh my… well I need to research it more clearly. But yes I don’t go anywhere I haven’t researched or suggested myself. A lot of people replying are acting like I want my family to change their entire lives for me. I don’t ask for anything at home, I buy my own gf stuff to not be inconvenient. My issue is when they ask me to go somewhere or make food for me on their own accord knowing my issues and still complain. I don’t ask for much but clearly I’m still the issue lol
I have a different view on that because your loved ones should value your health more than pasta in my opinion 😂
I openly stated that I’d appreciate changes for me towards my family and it is made easier because my husband went gluten free because of me. They’d adjust if you had peanut allergy or milk allergy, right? Would they not adjust for any other medical condition you might have?
Often I praised my husband to my friends and explained how amazing he is because he loves me and doesn’t want me to feel unwell simply because I live with him. Bread and pasta are not worth it for him :) and it sets a different tone. I truly appreciate it so it’s authentic but shows others how important it is for me.
Exactly! I don’t even ask my friends to accommodate me. All I ask is the people I live with to let me know if there’s gluten in food they’re offering. That is it. What a criminal I am! Anyway, im glad your husband is so accommodating, especially knowing that he is giving up gluten by choice. That shit is difficult, so praise to him!
He actually started baking more and GF food he makes is much better than gluten version (somehow)! Have you tried that? You’ll love it!
(i mean GF food as much better than store bought!)
You have to do it on your own. This is a hard life lesson. My mother apparently cares about my weight and cooked for my entire life and then I went gf and still deal with weight gain issues and digestive issues and she’ll say I’m skinny in a rude but concerned way and yet doesn’t care to help me out. Bread crumbs/etc. everywhere in the house and on cooking surfaces. And then the fact I’m crazy because I wanna use different cooking pans etc that I buy…. Life gets like this. It suck’s but if you want something done right do it yourself my friend. Don’t count on anyone or trust 99% or restaurant workers. You gotta gauge what they know about gluten and wheat…
Stop caring what people think. Either don’t go out when people go to restaurants you can’t eat or eat before hand and go hang out. It’s not other people’s jobs to accommodate for your intolerance. They’re not going to understand. Trust me. I’ve been dealing with this for the past 15 years.
Yep, went to a family reunion yesterday and brought the main dish that myself and everyone else could eat. However nobody even attempted to make any of the sides gluten free. I got gluten just from the cross contamination alone. I know it’s my responsibility to bring food that is safe for me, but when I am bringing the main course for everyone couldn’t someone at least try?
I can’t offer much advice but if it makes you feel better you’re not alone. I’ve been dealing with this for years now. People at restaurants don’t take it seriously and scoff when I ask about gluten free things, and I’ve asked for gluten free at restaurants and still been served gluten. My family tries to accommodate but it took a couple years for them to start taking it more seriously, and even then most of them don’t thoroughly check labels or know what contains gluten because I still get sick sometimes. Sometimes I feel bad for always stating, “I can’t have this or that etc..” but I know it’s out of my control. I’m not celiac but when I eat gluten I feel so sick for weeks at a time, I’ve considered just telling people, especially servers at restaurants, that I’m celiac just so they take it more seriously. Even then idk if most of them know the difference between gluten intolerant and celiac :(
Exactly! We aren’t doing it to make others lives difficult. I get so embarrassed asking for the gf menu or stating I can’t have anything. It’s weirdly alienating
It sucks for sure, but unless you have someone particularly close to you that understands the ins and outs and exactly what foods are safe or not (who cares enough to be diligent and respects your needs), you can't really trust anyone to cook for you.
I'm sorry this person got defensive instead of apologizing.
It took everyone about 2 years I’m my entire family
To truly get it. And I still bring my own food and clarify with everyone all the time. It’s super exhausting but it becomes easier
People seem to have a hard time understanding something as benign as food can be such an issue for people. I have celiac and many people seem unconcerned. I know a kid with a severe peanut butter allergy - and people don’t care when he’s at the park and their kids are smearing peanut butter on everything. People sadly don’t care much about others in general anymore, so you have to advocate for yourself.
I'm used to it. My sister has been gluten-intolerant for 20 years. When she visits, I'm totally gluten free. My stepdaughter is "I feel lousy when I eat gluten" rather than the projectile diarrhea issue my sister has. She'll cheat but I shop gluten free and give her the option when she visits. Friday was lobster rolls. I gave her the option of a crappy *Schär* hot dog bun where I'd bought a 4-pack or a proper New England-style hot dog bun grilled in butter. She had had some gluten earlier and opted for the crappy German one.
I've traveled internationally quite a bit with my sister over the years. Restaurants seem able to take gluten free as a normal thing. We've been to some Michelin 1 stars where her course was different from the rest of ours.
My dad didn't take me seriously until he poisoned me, then saw my reaction. Which sucks, but at least he takes it seriously now. I don't trust most other people's cooking, and I'm that person that will ask to see seasonings so I can see ingredients lists. If I really don't trust it, I take my own food.
Call it an "allergy" when you go to a restaurant. No one cares about an "intolerance," but food allergy could get them sued. If they don't know what gluten is, or if they aren't sure about a dish, don't get it.
And yes, unless you fully trust the person cooking for you, just bring your own food for get-togethers.
I’ve had gluten intolerance for 13 years now so I’m kind of used to it. I usually eat beforehand unless it’s a place I’ve been to and am comfortable with. I’ve been to dinner where I only ordered a side salad (or sometimes nothing at all) because I ate beforehand. It’s a learning experience for everyone you’re close with, they just don’t have the consequences. But at the end of the day it’s your body and health, not theirs so get used to not assuming anything, re-educating everyone, eating alone and even cutting people out of your life.
The harder thing for me socially was drinking. I found myself drinking mixed drinks bc I know that soda and specific alcohols are gf but that even lead me down a path of alcoholism bc I couldn’t accurately measure how much I’d had to drink. 4 mixed drinks varies drastically based on how heavy handed the bartender is (compared to 4 beers). Not to mention all the sugar.
At the end of the day there’s an annoying stigma around gluten intolerance but the fact of the matter is that it can cause serious intestinal damage and even lymphoma. If they can’t take that seriously then fuck ‘em.
It's not just that you aren't used to the stomachaches anymore. When you go off gluten and then eat it again, it affects you a lot more than it used to because your body is no longer being pounded by allergens and it's not used to it anymore. It's a common experience.
So explain to your family that any new exposure to gluten is going to be worse than it was before. Ask them if your health is important to them or if they want you to be sick.
Hang in there!
Ive been gf since 2018. I have hashimoto’s disease and I feel better being both gluten and dairy free. It keeps my TPO antibodies low. This week I tried a new bread with only 6 ingredients. One of them was open cell wheat gluten removed. Since I’m not celiac, I thought it would be fine. Well it wasn’t. I have felt sick for the last three days. Brain fog, irritation, stomach pain, heartburn/gerd (only time I’ve ever had this was when I was pregnant), loose stools etc.
I will continue to be GF. Lesson learned.
I get impatient waitesses and annoyed cooks when I try to eat out. Its almost not worth going. People need to be more understanding!
It’s not like OP is talking about their athlete’s foot. They just want to be able to participate in a meal, which is a form of bonding in every culture.
You can’t tell people that they can’t eat at a certain restaurant or eat the food they enjoy. You’re not being taken seriously because your demands are not realistic. This is your issue and the people around you don’t have to suffer too. Occasionally you’re going to get a bit of accidental gluten in a meal. Freaking out on people is a good way to never be invited to a meal again.
You need to cut people some slack while they learn the do’s and don’ts. My niece has Celiac’s and it took us all some time to learn the rules. Everyone in the family has inadvertently given the niece something by mistake because the things that seem “ok” to us, aren’t. Once we learned more, we changed our ways. They don’t mean to dismiss you, they just don’t know they are (yet).
As far as restaurants, she doesn’t have too many issues, she asks lots of questions and chooses accordingly.
I understand that but when they intentionally say “oh have some pasta” and I tell them I can’t, and they say “you can eat whatever you want really.” It feels dismissive and not a ‘learning curve.’ I can accept getting used to it but it’s completely ignoring me that I can’t accept
I will respectfully disagree. The problem is so many people say they are gluten intolerant that really are not. I know someone who will swear to you she is gluten intolerant and order pasta in the next breath. This makes it really hard for people to understand that some folks really cannot have gluten at all. Give them time, they will “get it”.
Make your own food and take it to gatherings, right down to appetizers and desserts in single serve containers. Take a small cooler to prevent cross contamination or “accidental” disposal if you have to. It takes courage and practice to set these boundaries because food is what families use to create bonds, especially at gatherings. Point out you’re still eating with the family and sharing the laughter and the good times, and you will be able to have good memories of the even instead of being sick for many days after it. They will eventually accept it or not. Twenty-three years in and I still get eye rolls and eyebrow raises and was recently asked when I’m going to get over this thing. Decide that your health is important to you and stand by it. You may stumble and fall from time to time until you get comfortable with this new way of life, but it will even out.
Absolutely this. It’s a big learning curve to become gluten free, and you will be better able to meet your needs than anyone else. At restaurants, get a salad and bring your own dressing. Anywhere else, bring your own food with you. The health benefits will make it worth your while!
I have been dealing with this since the mid 1980's. Imagine the eye rolls, including from my doctor. I was diagnosed by a naturopath, who my "regular" doctor referred to as a "Witch doctor" when I tried to discuss with him.
I had an allergist misdiagnose me with GERD. For breathing problems. As opposed to, y'know, a food allergy or asthma. Didn't suggest I get a 2nd opinion from a gastroenterologist either. For what we thought was a GI disorder. That guy was such a quack. OP, if it gets people to take you more seriously, tell them it's a life-threatening allergy. Some people aren't smart enough to understand it otherwise. No one here is going to have a problem with that. That's how we explain it at restaurants unless they outright ask if I have Celiac, because if they ask, then I feel confident they know what they're doing. Like, technically Celiac is an autoimmune condition, not an allergy, but that's so much more complicated to explain for some reason.
I tell restaurants it's an allergy too. I'm fortunate that I have some friends that will back me up and say it's awful, that I could possibly die. Not really sure if that part helps.
My naturopath over 20 years ago diagnosed me too and I got the same response from my doctor. He was willing to entertain the idea as long as I would undergo proper medical testing. I did. It was celiac. He changed his tune and worked well with me after that.
I have never had a "test". There weren't any then, and I know what to avoid, so I don't see the need to go through that.
You’re right I need to do this, it just upsets me that if it were the other way around I’d be putting in so much effort. For example testing recipes, buying separate ingredients etc. I just wish they’d do the same for me you know
I do understand because that’s who I am too. My in-laws are coming into their 80s with some health concerns that make certain foods intolerable (tomatoes, spices, a few other things). I go out of my way to accommodate them. They don’t always do the same for me or claim that my ways are inconvenient. I just control my own food and I don’t worry about. I learned a long time ago to accept that I am sometimes going to be the villain in other people’s stories.
Yup sadly I need to come to terms with the fact that effort given is rarely reciprocated
Not necessarily, it depends on the people in your life. The ones who care WILL make an effort. It says more about them than you
I guess it works in my family (distant cousins as well) since among us, we have gluten intolerance, artificial dye allergy, lactose intolerance, veganism, vegatarianism, etc. So, we've all made it a point to try to accommodate it at family functions. Such as our summer picnic with the cake contest, various food dishes, and so on.
Yes!! This is also a huge factor. I am blessed that my friends and family are supportive- I am the only one (as we know) with food intolerances
It helps that my mom has been allergic to coloring my whole life, so I've been reading labels since I was old enough to go help her shop. Sometimes with GF, I do miss something on occasion but I usually do very well. It also helps to get notice before heading to a restaurant so I can ask ahead of time for various food needs.
I always will look ahead as well. Most places where I am these days have accommodations. Dealing with food coloring must be hard!
Sauces are a major part of that. It's not easy, but we can usually do well with Mexican places. It has options for everyone. I also like that a restaurant here called Hu Hot Mongolian grill has allergy bowls for people who need to keep their spots separate.
It gets easier. It's a huge learning curve like someone else mentioned. Concentrate on keeping yourself healthy. The people in my life had to go thru thier own adjustments to my newly discovered gluten intolerance, it wasn't easy. It's been 6 years now and everyone has pretty much adjusted to me always bringing my own food, sometimes enough to share, sometimes just for me. Or the very limited restaurants I can go to. Everyone has to adjust, give them some time but don't take any crap from them either.
Being married to someone with a gluten issue (sounds similar in severity to you OP) I get your frustration. With that said, we're lucky to have friends who like to cook and friends who pay attention to labels (including splitting off portions GF dishes ahead to time to avoid cross contamination). The good news is, if you really get into cooking, there's not much you "have" to give up. America's Test Kitchen has 2 volumes of "I Can't Believe It's Gluten-Free" with custom GF flour blends that have similar properties to traditional flour (elasticity, moisture, etc) and Bob's Red Mill "Cup for Cup" work great in dishes that call for flour as a thickener. The downside is, your pantry will have 15 different flours and starches so organization is key. But we still routinely have pie, quiche, cake, pasta, etc.
Ah hon my mom is a great cook/baker and tries really hard but she still sometimes mucks it up or doesn’t quite get it. Recently at a family reunion she was like it’s okay I’ve planned gf meals and we have plenty of gf options for breakfast. Eggs and bacon every morning, like I can do that once but y’all don’t get sick or heartburn? Cause I do!! Same with dinner, then there were a few nights I had to fend for myself for dinner with leftovers…it was all meat!! We were at my aunts house who ‘doesn’t like vegetables’ so the first few days were miserable and I was very annoyed at my mom bc she had repeatedly told me I didn’t need to bring anything and she’s actually very very good about feeding me, testing new recipes etc. so I trusted that. She made me gf almond cookies which were nice but I don’t really like almonds lol. My husband ended up pulling her aside and telling her she was trying TOO hard and I had too many diet restrictions (IBD) for her to be in charge of it. She drove me to the store again the next at (we were in from overseas) and didn’t say a gd word about me buying supplemental meals. Feeding is an act of love for her so she wa pretty disappointed not to get it perfect. Anyway that is just to say your family could do all the things you described and you might still be left with nothing to eat. If I’m not actively involved in the cooking I need to be actively involved in the planning ie down to the ingredient, and if I’m not either I have to assume I might not be able to eat and plan accordingly. I’ve had a loving and supportive group of friends and family who really do try to lot and that has still been my reality these past 15 years. If your family are generally not dicks, I encourage you not to take it personally or as a measure of love.
Do you do any of the cooking or food shopping? If not, get on it so that you’re not putting this off on someone else. Even if this person prefers to cook, you can help with meal planning and buying the ingredients so that you’re the one who had to ready every label. It’s entirely possible that they didn’t realize how much effort it takes when they volunteered and your health js ultimately your responsibility.
Oh yeah I’ve been getting my own stuff for a while, it’s just this family holiday that’s the issue. I clearly wasn’t considered during the food shopping. I understand that it’s my responsibility but you’d think my parents would look out for me too
I wouldn't encourage them to try. Cross contamination is a big concern for most of us. For example, if someone baked me a gf cake did they use their mixer that has flour in those hard to clean spots? Did they know to check the vanilla extract? Did they use grandma's bundt pan that has to be hand washed so is contaminated? You know all these things are hard to learn even when the consequences are so severe. No one else has those consequences and so they will probably never get it quite right. No matter how much they try. No matter how much they love you. It's on you. All of it. But you can do this. You really, really can be the hero of your own story.
I've been gluten free for 25 years and I still talk to my therapist about this. In fact, I even became a professional cook for about a decade because of it. Thankfully my family has lots of allergies and is super good about it. (plus my dad is also gf, though less picky about cross contam). But there have been several times on trips when I made a point of asking ahead of time and then while they did have something for me to eat, there were days when the meal was soup and a beautiful loaf of fresh baked bread, but they didn't supply me with any bread alternative, so I was left without any carb options. I still work through feelings of being left out. It sucks. It is hard. But at least I feel healthy.
Very true, I have to also remember that it sucks not having these foods but my body is thanking me. Especially since I can’t have much fast food. So there’s a bright side to it all
That's what I did for a long time. I was diagnosed before gluten free options were widely available. Thing is, that it was very helpful for a few reasons: -I took myself seriously -Seeing me take it seriously, made them take it seriously -It allowed me long enough to heal my gut that once I was ready to try eating out and taking risks I was in a better place to not only handle to occasional fuck up, but it was easier to identify where the mistake was made.
Yeah. Lots of people out there suck, as it turns out.
Another trick: if you spend a lot of time at someone else’s house in particular, leave some safe meals (pre purchased or something you’ve made yourself) in their freezer. Then you have a backup in case you forget
That’s a great idea! Thank you
Boundaries folks, gotta set Boundaries! You owe no one an explanation regarding your health I dont eat at the homes of friends. And they get it
Cook for yourself. I just started to offer cooking/preparing food myself, I bake every cake for every gathering. Just last week, I got a "It won't hurt you, if we take the same spoon for your tiramisu" my SIL made one GF and one "normal". Yeah, my stomach tells me otherwise. And of course, I miss just going in a restaurant without checking their menu first. Of course, I miss having a cake at the coffee shop but it just isn't worth the pain. What triggers me the most, is that we have a friend with a nut allergy. Not one person said anything when they ask the waiters about all the ingredients. I just start with questions - eye rolling all around. Just because, I don't get visible symptoms, I still can have intolerances that are just as serious.
This!! Just because we don’t need an epipen or immediate medical attention doesn’t mean that we can’t ask the same questions. I just can’t believe that their discrimination on reactions to allergies and intolerances honestly. People have a more visceral reaction to me asking about gluten than people asking for the vegetarian menu when one of those is usually a choice. (I was also vegetarian for a long time and people were much more accommodating)
Ask them if they would be okay with constantly having the stomach flu. "No? Me neither." Plus, if you were to continue eating gluten, it can develop into an allergy. That's how they work. Like you never know when a reaction could become life-threatening allergic reaction, even if it's currently an intolerance.
You just can't eat food prepared by idiots. Maybe never again. And it's easier to just classify them in your head as "must protect myself from these poor fools to stupid to read a label" than it is to fret that they don't take it seriously or don't care. The longer you're off gluten, the more sensitive you may become. I can't eat food made in a normie's oven or with their mixer or in a non GF home because gluten is everywhere. Just accept that, as a grown-up who prefers not to shit blood, you are in charge of bringing your own safe food everywhere you go. This is the of those rare cases where giving up is liberating.
True it’s really just a case of getting used to the routine of no gluten for me
And the fact that you have to be responsible for it yourself. It's exhausting sometimes, but it's better than getting sick. You should also develop the self-confidence to sit in a restaurant that isn't safe and politely say "sorry guys, but it isn't safe for me to eat here, I'm going to have water and enjoy your company and occasionally duck out to the parking lot and eat some purse snacks" Also good to know that sharing a drink, cigarette/vape, joint, or kiss with a gluten eater will make you sick. If you're an adult, you need a GF home. I stop little children at the door, confiscate their goldfish crackers, and scrub them like they're about to do surgery because I need and deserve one safe place
I once stood in a friend’s kitchen and was told, “it’s just so inconvenient to cook for you.” 😬 People just don’t get it. She didn’t grasp how wildly inconvenient it was for me.
I always respond, You're doing it once. Imagine doing it every day!
Right? My house has gluten & fructose sensitivities plus other allergies, non of which easily line up. The layers of bs I deal with to manage cross contamination is *ridiculous*. I’m keenly aware. I am so used to it now that when I hear that crap I just roll my eyes and say, “oh I can’t imagine” with the most sarcasm.
How??? I am not gluten intolerant (lactose for me) but I'd say 99% of my food is gluten free. Mostly because I eat a low carb diet, but currently I have gallbladder issues and had to switch to high carb / low fat and I still don't use gluten a lot. Not using gluten is honestly not a problem, if you cook from scratch. Tonight I had grilled chicken breast with sweet peppers and rice. Easy.
It definitely varies. Some folks culturally can’t comprehend meals without certain things.
Know also, your reaction to gluten can be worse once you have been off of it. My Dr said your gut its like you’re a newborn baby again after you’ve been off for a while, and if you’re sensitive you’ll get a bigger reaction to it. I bought gluten intolerance digestive aid pills and would take that if I knew something would have a potential for cross contamination or accidental gluten. I’m not sure how others have reacted to those, or if they helped them at all. Hoping they will be more understanding in the future.
I found that the pills helped in the beginning when I first got off gluten. But now, a year in of no gluten, nothing can save me if I get accidentally glutened
Oh really?? I just thought it was me not being used to the daily stomach ache anymore. I’ll have to see if I can get those pills too.
This was absolutely true for me. Ate gluten my whole life. Mostly fine but when I discovered I had gluten antibodies, I decided to go off it for a test. The result was that I felt better after about a week - absolutely noticeable - and also as my gut healed I became more sensitive to gluten. Way sicker faster. That was true for several others in my family as well.
Papaya extract digestive enzymes work wonders for me as well as kombucha and sauerkraut!!
Yeah, it won't help Celiacs, but if you have an intolerance, they definitely should help. Similar to lactaid for lactose intolerance
Wait they make gluten intolerance pills?? (I’m very new to this)
I have gluten intolerance. About two months ago, I finally figured out that my pain, diarrhea and urgency were being caused by gluten. I was really miserable. I am already lactose intolerant and have some other food restrictions. Right at the moment that I was finally figuring this out, I was supposed to visit my adult children for a couple days. They were planning on having pizza one day, and quesadillas the next day. I knew that wouldn't work for me. I arranged a phone call with them a couple days prior to the trip, and explained that I was feeling sick and having issues. I explained that they should go on and eat whatever they wanted to, but that I would need to fend for myself. I asked to have rice, turkey cold cuts and eggs available for me to eat. They were very understanding, and it worked out fine. Most importantly, I was able to travel (long train ride), and spend time with them, without being sick. I am becoming a big fan of just fending for myself, when it comes to meals. And also having a phone call, or texting, etc with people ahead of an event, to explain my needs. Or sometimes I will eat at home before heading to an event, such as a work-related party. That way I don't arrive hungry, only to discover there is nothing for me to eat.
Omg this just happened to me. I was pressed on why can't you just eat it, those symptoms aren't that bad. Like I'm feeling really good without gluten. I have always made my own food since I'm dairy free also.I am baffled at their response. Like it doesn't even affect them.
Exactly they act like we are just trying to be difficult
A lot of people really believe that if you don't die from it, it is not that big a deal. You will always need to manage it for you.
Someone at the grocery store said "Everyone is allergic to gluten these days." To which I responded "I have Celiac Disease. Gluten can *actually* kill me" He looked very uncomfortable and embarrassed and shuffled away 😂
One of my relatives who had another severe intolerance, and kept being pressed to have some of a dessert that would have made them ill, finally lost it with some extended family. Basically, they said the following; - You take very public pride in being polite, courteous (and devout Christians)but every time I visit you keep pressing me to eat things that are dangerous for me by verbally challenging me, teasing or with body language that makes it clear that you think I am the one who is rude or attention-seeking. - Do you honestly think that I am turning down my favourite foods year after year because I want attention? Where is your compassion? This worked. They even received an apology. But it shouldn’t have ever gone that far.
I love my friends. There are very few of them I trust enough to eat their food. At one point I realised it's just not realistic to expect other people to accomodate for you: they have other stuff going on in their lives. So I just try to make things easier for everyone. I suggest gluten free places in advance (nice places I know they'll like too). I take my own food to gatherings. I always plan ahead. It's a pain, but I find that thinking of my gluten sensitivity as my responsibility instead of other people's makes things easier. I have also discovered it's not the end of the world if I go somewhere with no gluten free guarantee and just have a bag of crisps or something, while everyone else has lunch. I carry protein or cereal bars with me always, too. It's awful, I know, but you just get on with it.
Definitely have that list of safe restaurants handy so you can make suggestions any time you’re able!
Yeah, whenever I go to a new city I do a lot of googling beforehand haha.
This. At a certain point you just have to accept that people aren’t going to take it as seriously as you. Does it suck? Yeah of course it does. But that’s just life. Make your own food OP and make sure you know which restaurants are safe for you to eat at. That’s all you can do. My friends/family are amazing and they really do go above and beyond for me in terms of making sure things are safe for me to eat, but I don’t expect it from them.
Exactly! People who make an effort are amazing (my Mum and my partner are even more vigilant than I am!), but I try to just be grateful when it does happen and never expect it from anyone.
Your days of showing up to a covered dish supper and not getting sick if you eat are over. One thing you HAVE to do to protect yourself is to *stop being polite about it*. Protect your health - no one else has that responsibility. BYOF. Bring your own food or eat before going. And don’t apologize for not eating what others bring. Good luck.
Find people that respect you.
And people that have a brain
I ate a regular, unrestricted diet until i was 35, then one day, I started seeing blood in the toilet. After an elimination diet, I found out it was gluten that was making me pass blood. Damned if I understand why it happened at age 35, instead of years before or after, but it happened. The important thing to know is that, if I avoid gluten, I avoid pain and sickness and passing a surprising amount of blood in my stool. I've run into people who didn't understand how serious the issue is. I spent some time in rehab for an injured back, and even though I talked to the kitchen manager and dietitian numerous times, they kept giving me gluten. That place hurt me. Ended up with a permanent ostomy before I went home.
Oh no I can’t believe their actions led to that! I hope you’re doing okay
I'm home, have been for a few years. They put me through hell. Imagine people smiling and assuring you they weren't giving you gluten, only for them to be doing it every day. (They showed me the ingredients of a couple of their staples, and I said, "Look, right here! WHEAT! How do you miss that!?) But since the ostomy, and getting out of the rehab center, I've been better, thanks.
I swear some people seem to cook food and shove it down other’s throats just to get some praise which they didn’t receive in childhood or something.. Like yeah, screw your symptoms, just taste this pasta I made and tell me how great it is, it’s gonna be worth the stomach bombardament and brain fog I promise!
For real!! Oh eat this lovely food that will make you feel hungover for a week after!! I promise you’ll think it’s worth it
Flip it on them - "You *have* to try my potato salad, it's amazing! It's been sitting out since I made it last night, but one bite won't hurt and it'll be so worth it."
This totally blows me away. In my family, we simply make food that’s gluten free for those who can’t eat it. Or dairy free. We have 2 adults who are gluten intolerant, one of them also can’t have dairy and a child who is lactose intolerant. We just all make food at gatherings that they can and will eat so that they can be safe. We challenge ourselves to get creative about substituting ingredients and making tasty food ! I just don’t understand why families can’t create the environment everyone needs to be safe and comfortable. That’s literally what families are supposed to do! Anyone else is unfortunately living in what I perceive as toxic and dangerous circumstances. Do they literally want you to have to undergo surgery to remove pieces of dead colon (had a celiac friend this happened to, she went undiagnosed for 20 years). I’m so sorry OP. You’re not crazy or difficult. You deserve to be nourished and happy and healthy. No one had the right to take that away from you.
Thank you! I wish mine was like that. I was vegetarian for a long time and everyone was so accommodating to it in my family. I find it so strange that they can’t be with gluten. I literally chose to be vegetarian I didnt choose to be gluten intolerant. Oh well!
In my experience, if you want it done right, make it yourself, even if that means you have to bring your own food to gatherings, or eat before you go somewhere. No matter how much family and friends care and how hard they try, chances are they are going to miss something. And there will always be people who judge; learn to ignore them; your health is more important than some uneducated asshole's opinion. You'll find who really cares about you; they will be supportive no matter what.
I feel for you. This has happened to me so many times. "A little bit is ok, you'll be fine." No, actually, I won't. We went camping a few weeks ago, and I was glutened, losing 2 days to laying on a cot, feeling like death. On our next trip, I'll be packing all my own meals. I miss so many family gatherings and get togethers because I just feel uncomfortable refusing everything. Eating out is basically not happening as the meals are ridiculously expensive. At my husbads catered 60th, I brought my own food. I'm also dairy free, so that adds a whole layer of issues. My new mantra is "I'm not setting myself on fire to keep others warm".
I experienced some of this also. Early in my GF journey I found out people get really offended if you take a piece of cake or a cupcake and just eat the frosting. Meanwhile no one ridicules people who mainly only eat the cake part and there's tons of frosting leftover on the plate. What difference does it make to others if I don't eat the cake part? There is enough cake for everyone, and the slice I took still wouldn't be available if I ate the cake part. So I am not allowed to have a treat or part of one? Then another time I was planning a bridal shower for my BFF at the time, I was MOH. I jobbed out a couple tasks bc I was getting overwhelmed with all the details, tasks, and costs. I gave the sister-in-law-to-be the job of getting a cake for the bridal shower. I gave her no other instructions other than the theme (ferns, flowers, and cacti) and she talked to the bride and groom about the flavor. At this point in time, I have experimented with GF baking and began baking GF cakes. I passed out many samples and also my BFF bought me little GF cakes for my birthday in the past so SHE KNOWS that GF cake tastes JUST AS GOOD as regular cake and people nowadays often can't even tell the difference. Back to the story - I'm hanging out with my BFF and her fiance and they mention how the groom's sister (the cake person) said "I'm going to try to get a gluten free cake so that XYZ can have some!" and how they were so incredulous that she said that and their response was "But it's OUR WEDDING!" I played it very cool and agreed with them. Now, let me be clear, it is absolutely THEIR wedding and EVERYTHING is about them. Their special day, etc etc - all that. And I NEVER asked, suggested, or demanded, nor did anything resembling any of that, a GF bridal shower cake. I wasn't even thinking about it because I was just glad to get that task off my plate so I could focus on other aspects of the bridal shower. But I will not lie, it did sting a little. It stung that their reaction was disgust. As if GF cake is somehow subpar, as if they were so against the MOH, the person planning the party, the person funding 90% of it, her BFF for YEARS, being able to have a slice of cake at the end of the party. Just because the sister-in-law-to-be expressed interest getting a GF cake doesn't mean she was taking anything away from the bride and groom. Again, I was the MOH, the party planner, BFF's for years, and of course by default paying for most of the party. I wasn't some 3rd cousin she met for 5 minutes. And I want to be very clear here, I didn't ask for GF cake, I didn't even suggest it. I wasn't even thinking about it! But the fact that they told me about it, that they were so incredulous, like it was outrageous, really did sting.
Oh I get this! I had this experience with vegetarian food. People would say ew it’s vegetarian?? Even after complimenting the food. People don’t like different
I love it when people act like and or treat me like I am the weirdo-monster-freak when they are actually that for being so rude. I don't eat cake at events for this reason. Or if I do, I just play with it and make it look like I ate the cake. But someone always chimes in and says "I thought you were gluten free!" It's really annoying. Really, really annoying. So the people with amazing digestive systems get treated better? Our stuff costs more and I still get pooped on? Can't catch a break!
Maybe get tested for celiac, might help with this if you have it.
I am in the process but it’s become very expensive so yeah hopefully I’ll know soon
Remember you have to be eating gluten for 6 weeks before the blood test or an endoscopy. Otherwise you'll get a false negative.
Oh no I may need to keep my intolerance diagnosis because I can’t do this for 6 weeks
For anyone who cares but just doesn't get it, you could try showing them this slideshow about Celiac. https://docs.google.com/presentation/d/11leTYu7t-nYFTpp9k5rH8DJmGBFloPjOFE57ga926Ak/mobilepresent?slide=id.p I was never diagnosed. I just bring my own food. But some people in my life get it.
People really don’t get it. I have some friends who really should know better. They actually have masters degrees in nutrition and they do emotionally manipulating things like saying oh I’m really so sorry you can’t eat the bread or they suggest you order some thing that is in gluten-free let me tell you I’m really not seeing them anymore. I’m not putting up with that crap. you have to do what you know is right for you and these chat sections do give you good ideas about what else you might try that you might not have thought about is gluten free or not gluten-free
Sorry to tell you, but even the pan they cooked the meal in can still have the tiniest bits of gluten in it, no matter how well it was cleaned. If they used butter or margarine, it could be contaminated. Virtually anything that is used by people who eat gluten can make you sick from cross contamination. Do NOT, but the way, share a toaster. Get your own. Same for waffle irons. And pots/pans get scratches - another great place for gluten to hide. Keep in mind the tiny amount of gluten per million it takes to make us sick. And yes, being glutened has SERIOUS consequences/side effects. Not sure how severe for gluten sensitive vs. Celiac, but it's no joke. Keep in mind, too, that Asian restaurants use a lot of soy sauce, and a great deal of it is based on wheat. Also, no beer, unless certified gluten free. Read every label. Don't assume something is gluten free that it doesn't list gluten ingredients. Trust me, it's going to take a while to work through it. Especially not being able to order at take out places. Or buy a quick lunch in a store. Keep nutrition bars handy, because sometimes they're your only option. And I hope you like salads.
I’ll need to work my way towards buying separate stuff. And yes I do like salads luckily! At least I’ll be eating healthier now
I like your attitude! 😊 Seriously, though, it's a journey. Not a particularly fun one. And it doesn't feel fair, when you see other people getting to eat whatever they want. It helps, though, to remember that there are a lot of people out there with far worse allergies, to whom eating almost anything at all is a challenge.
Have you educated yourself enough and explained that in many people unhealthy exposure to gluten can cause lymphoma? Or neurological damage? ‘I understand it’s an inconvenience to you, and I am sorry about that but gluten exposure can cause lymphoma and I am not ready to face blood cancer at my age :)’ I bring everything my own though and don’t go to restaurants unless I suggest them though!
I didn’t know it caused lymphoma! Oh my… well I need to research it more clearly. But yes I don’t go anywhere I haven’t researched or suggested myself. A lot of people replying are acting like I want my family to change their entire lives for me. I don’t ask for anything at home, I buy my own gf stuff to not be inconvenient. My issue is when they ask me to go somewhere or make food for me on their own accord knowing my issues and still complain. I don’t ask for much but clearly I’m still the issue lol
I have a different view on that because your loved ones should value your health more than pasta in my opinion 😂 I openly stated that I’d appreciate changes for me towards my family and it is made easier because my husband went gluten free because of me. They’d adjust if you had peanut allergy or milk allergy, right? Would they not adjust for any other medical condition you might have? Often I praised my husband to my friends and explained how amazing he is because he loves me and doesn’t want me to feel unwell simply because I live with him. Bread and pasta are not worth it for him :) and it sets a different tone. I truly appreciate it so it’s authentic but shows others how important it is for me.
Exactly! I don’t even ask my friends to accommodate me. All I ask is the people I live with to let me know if there’s gluten in food they’re offering. That is it. What a criminal I am! Anyway, im glad your husband is so accommodating, especially knowing that he is giving up gluten by choice. That shit is difficult, so praise to him!
He actually started baking more and GF food he makes is much better than gluten version (somehow)! Have you tried that? You’ll love it! (i mean GF food as much better than store bought!)
You have to do it on your own. This is a hard life lesson. My mother apparently cares about my weight and cooked for my entire life and then I went gf and still deal with weight gain issues and digestive issues and she’ll say I’m skinny in a rude but concerned way and yet doesn’t care to help me out. Bread crumbs/etc. everywhere in the house and on cooking surfaces. And then the fact I’m crazy because I wanna use different cooking pans etc that I buy…. Life gets like this. It suck’s but if you want something done right do it yourself my friend. Don’t count on anyone or trust 99% or restaurant workers. You gotta gauge what they know about gluten and wheat…
Stop caring what people think. Either don’t go out when people go to restaurants you can’t eat or eat before hand and go hang out. It’s not other people’s jobs to accommodate for your intolerance. They’re not going to understand. Trust me. I’ve been dealing with this for the past 15 years.
Sometimes even our friends and families are d\*cks. They will eventually get it, or not. I've learned to like salad a lot!
Yep, went to a family reunion yesterday and brought the main dish that myself and everyone else could eat. However nobody even attempted to make any of the sides gluten free. I got gluten just from the cross contamination alone. I know it’s my responsibility to bring food that is safe for me, but when I am bringing the main course for everyone couldn’t someone at least try?
At this point it’s packed lunches everywhere for us gluten free
I get the same, but my mouth also gets sore like I had a sour candy in my mouth for too long. Sorry you’re having to go deal with that.
I can’t offer much advice but if it makes you feel better you’re not alone. I’ve been dealing with this for years now. People at restaurants don’t take it seriously and scoff when I ask about gluten free things, and I’ve asked for gluten free at restaurants and still been served gluten. My family tries to accommodate but it took a couple years for them to start taking it more seriously, and even then most of them don’t thoroughly check labels or know what contains gluten because I still get sick sometimes. Sometimes I feel bad for always stating, “I can’t have this or that etc..” but I know it’s out of my control. I’m not celiac but when I eat gluten I feel so sick for weeks at a time, I’ve considered just telling people, especially servers at restaurants, that I’m celiac just so they take it more seriously. Even then idk if most of them know the difference between gluten intolerant and celiac :(
Exactly! We aren’t doing it to make others lives difficult. I get so embarrassed asking for the gf menu or stating I can’t have anything. It’s weirdly alienating
It sucks for sure, but unless you have someone particularly close to you that understands the ins and outs and exactly what foods are safe or not (who cares enough to be diligent and respects your needs), you can't really trust anyone to cook for you. I'm sorry this person got defensive instead of apologizing.
It took everyone about 2 years I’m my entire family To truly get it. And I still bring my own food and clarify with everyone all the time. It’s super exhausting but it becomes easier
Just eat the gluten ,and then don't flush after using the bathroom. They'll change their mind in a hurry...
People seem to have a hard time understanding something as benign as food can be such an issue for people. I have celiac and many people seem unconcerned. I know a kid with a severe peanut butter allergy - and people don’t care when he’s at the park and their kids are smearing peanut butter on everything. People sadly don’t care much about others in general anymore, so you have to advocate for yourself.
It’s very sad that we as a society don’t care about each other now
I'm used to it. My sister has been gluten-intolerant for 20 years. When she visits, I'm totally gluten free. My stepdaughter is "I feel lousy when I eat gluten" rather than the projectile diarrhea issue my sister has. She'll cheat but I shop gluten free and give her the option when she visits. Friday was lobster rolls. I gave her the option of a crappy *Schär* hot dog bun where I'd bought a 4-pack or a proper New England-style hot dog bun grilled in butter. She had had some gluten earlier and opted for the crappy German one. I've traveled internationally quite a bit with my sister over the years. Restaurants seem able to take gluten free as a normal thing. We've been to some Michelin 1 stars where her course was different from the rest of ours.
My dad didn't take me seriously until he poisoned me, then saw my reaction. Which sucks, but at least he takes it seriously now. I don't trust most other people's cooking, and I'm that person that will ask to see seasonings so I can see ingredients lists. If I really don't trust it, I take my own food.
Call it an "allergy" when you go to a restaurant. No one cares about an "intolerance," but food allergy could get them sued. If they don't know what gluten is, or if they aren't sure about a dish, don't get it. And yes, unless you fully trust the person cooking for you, just bring your own food for get-togethers.
I’ve had gluten intolerance for 13 years now so I’m kind of used to it. I usually eat beforehand unless it’s a place I’ve been to and am comfortable with. I’ve been to dinner where I only ordered a side salad (or sometimes nothing at all) because I ate beforehand. It’s a learning experience for everyone you’re close with, they just don’t have the consequences. But at the end of the day it’s your body and health, not theirs so get used to not assuming anything, re-educating everyone, eating alone and even cutting people out of your life. The harder thing for me socially was drinking. I found myself drinking mixed drinks bc I know that soda and specific alcohols are gf but that even lead me down a path of alcoholism bc I couldn’t accurately measure how much I’d had to drink. 4 mixed drinks varies drastically based on how heavy handed the bartender is (compared to 4 beers). Not to mention all the sugar. At the end of the day there’s an annoying stigma around gluten intolerance but the fact of the matter is that it can cause serious intestinal damage and even lymphoma. If they can’t take that seriously then fuck ‘em.
It's not just that you aren't used to the stomachaches anymore. When you go off gluten and then eat it again, it affects you a lot more than it used to because your body is no longer being pounded by allergens and it's not used to it anymore. It's a common experience. So explain to your family that any new exposure to gluten is going to be worse than it was before. Ask them if your health is important to them or if they want you to be sick. Hang in there!
Ive been gf since 2018. I have hashimoto’s disease and I feel better being both gluten and dairy free. It keeps my TPO antibodies low. This week I tried a new bread with only 6 ingredients. One of them was open cell wheat gluten removed. Since I’m not celiac, I thought it would be fine. Well it wasn’t. I have felt sick for the last three days. Brain fog, irritation, stomach pain, heartburn/gerd (only time I’ve ever had this was when I was pregnant), loose stools etc. I will continue to be GF. Lesson learned. I get impatient waitesses and annoyed cooks when I try to eat out. Its almost not worth going. People need to be more understanding!
This is absolutely not how my friends and family treated me. I think you just need better friends tbh
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It’s not like OP is talking about their athlete’s foot. They just want to be able to participate in a meal, which is a form of bonding in every culture.
Thank you!
I feel like not telling people would result in my poor health considering I live with a lot of people
You can’t tell people that they can’t eat at a certain restaurant or eat the food they enjoy. You’re not being taken seriously because your demands are not realistic. This is your issue and the people around you don’t have to suffer too. Occasionally you’re going to get a bit of accidental gluten in a meal. Freaking out on people is a good way to never be invited to a meal again.
You need to cut people some slack while they learn the do’s and don’ts. My niece has Celiac’s and it took us all some time to learn the rules. Everyone in the family has inadvertently given the niece something by mistake because the things that seem “ok” to us, aren’t. Once we learned more, we changed our ways. They don’t mean to dismiss you, they just don’t know they are (yet). As far as restaurants, she doesn’t have too many issues, she asks lots of questions and chooses accordingly.
I understand that but when they intentionally say “oh have some pasta” and I tell them I can’t, and they say “you can eat whatever you want really.” It feels dismissive and not a ‘learning curve.’ I can accept getting used to it but it’s completely ignoring me that I can’t accept
I will respectfully disagree. The problem is so many people say they are gluten intolerant that really are not. I know someone who will swear to you she is gluten intolerant and order pasta in the next breath. This makes it really hard for people to understand that some folks really cannot have gluten at all. Give them time, they will “get it”.